Who is Nicolas?
Nicolas is 12 years old this year! He was diagnosed with Angelman Syndrome with Epilepsy and Cyclic Vomiting Syndrome.
It causes delay in his development. Nicolas is not able to communicate verbally, has problems with sleeping and balancing his body. Due to his underlying condition, Nicolas also has intellectual disability.
However, Nicolas is a happy boy! He smiles and laughs frequently! He has this happy and excitable personality in him!
As a full time caregiver and mother to Nicolas , all of my time and energy is spent on him. We also use part of my savings to pay for his long term medications, hospitalization and physiotherapy fees. Most of the time, caregiving for Nicolas makes me feel a heavy responsibility, and sometimes stressful. However, all these goes away when I saw his happy face and when we see improvement in his development. I would feel extremely happy and encouraged.
I would like to take this chance to thank RDSS for the schemes that allow me to claim for some reimbursement. This allows our family to defray some cost for Nicolas therapy needs. We are also extremely grateful for the sponsors and donors for helping to fund the Home Based Learning and Therapy Support, it really helps us a lot in improving the quality of life for Nicolas. We also appreciate the events that are organized for the beneficiaries and their families so that we have the opportunity to meet up with other parents, and to share our experiences and joy with caregiving of our child who has a rare disorder.
Because of the fellow support I found in RDSS, I do not feel alone and hopeless.
I hope that other families who are in this similar journey, to also stand positive and remain strong. Remember, you are not alone. We also do hope one day, the public can be more tolerant and considerate towards a person with special needs.
I believe Love Is Not Rare!
Nicolas, Daddy and Mummy loves you! ❤️